Elsa - Dump it here darling… best place… So scary… we’ll flutter in and hold your hand… no point in me telling you that worrying won’t change the results one little bit… so I won’t…
JMR love the quote
doz - do NOT, repeat NOT change your posts, you, anything… you give us all SO much…
Yvonne - good on ya girl! Keep posting - and fluttering
Babysteps - is there only one BCN? We have 3 over 2 hospitals and I could call any of them if I wanted. Mine has been a life-saver, so I’m so sorry yours doesn’t return calls. The Macmillan team are a good suggestion…
have a good day one and all… I put my wig back in her box this week… felt GOOOOD!
Elsa xx
What can i say to stop you feeling soooo anxious, there is nothing really as i have been there waiting for results and the WAITING is the worst bit, i used to go shopping and buy something nice for ME, or i would treat my friends to coffee at costa. Dos and others will be along soon to give u some peace of mind, in the mean time i am sending you lots of hugsxxxxxxxxyvonne
hi again
Just wanted to tell you all about the day i had yesterday
I went to a lymphoedema meeting at the hospital where i had my treatment last year. Well there were 17 ladies there, this lady has been giving these talks for 13 years, she asked have any of you got lymphoedem sooo up went my hand, i was the only one who put a hand up(but am sure some of them have it) Well i told her what my dr told me to do, she then put her hands on her head and said NO! NO! stop doing that and get yourself refered to a clinic or see BCN who will reffer you. she went on to say once you have lympho it does not go away and can only be treated not cured. Well i sat there haveing real hate for my left breast, wishing i had made the disision to have it removed instead of just haveing the lump removed, as i have seen photos of how bad it can get with the lympho.
so another trip to GP to see if i can get this sorted. my breast just seems not to settle down and leave me alone.
Have been watching what i eat so i could lose a few pounds, and have put weight ON! friend told me thats the tamoxifen. It just gets more deflating. ho well up wards and on wards.
Emm, hope everything goes well for you to day at your appointment xx
You’re right, the waiting is the hardest part as your imagination runs riot;going shopping for something nice for me sounds good. I’ve got a friend coming round this evening so may bake something like scones with lots of jam and cream, I know we shouldn’t but what the heck!!
So, here I am again sitting in my PJ’s at quarter to ten drinking yet more coffee and still only thinking about getting dressed!! Might listen to Woman’s Hour at 10 while I’m in the bath (got hooked on it since being off from work). My cat is sitting next to me whilst I’m writing this, we seemed to be joined at the hip these days,she never leaves my side for a minute.
Thank goodness for Flutterbies,its so good to know that you’re all out there xxx
Right, just found a recipe on the BBC Good Food site for Ultimate Scones!!That’s the one for me…now, do I get washed and dressed or do I make another coffee and listen to Woman’s Hour then get dressed? Well seeing as Woman’s Hour has now started there is only one answer!!
Firstly Em xx Its the last one sweetie go forth and then run like the wind Both hands are outstretched and waiting… tonight you can PJ relax look forward to your holiday and for you and Col I wish sunshine smiles and a lot of Me time xxxxhugsxxx
Elsa Jane is right there is nothing we can say to take away the anxiety… but I think you can take a little away in the fact that they hav’nt called you back urgently and that IS a plus side to it… we have all struggled with going back to work hon and advice from one who went back way too early is DONT GO BACK till you are ready in body AND mind! as for the time… it is an individual thing, just do the right thing for you xxx
Janice Faith hope and lots of imagination spur me on now I will be a butterfly one day but until then I’m learning to fly as a flutterby and thoroughly enjoying the experience… its not everyone who gets to be in this very exclusive club of ours xxxx
Jane WOOHOOO!!! wig in box… what can I say my hairy friend other than walk with pride and keep that head held high you got there hon xxxx
Yvonne Lympho is a pain in the bum… it does’nt ever go but it can be controlled… my lovely McMillan Nurse put me straight onto the Lympho Nurse and I was’nt waiting long at all… tho mine is’nt as bad as some I do still need the sleeve and glove at times so it is a must that you get seen asap as for hating your breast bless you, mine feels alien at times but its still me… wonky or not I only had the lump removed and had the same thoughts but you will find a bit of sympathy for it soon when all the rubbish is over… dont and I repeat dont look online at pics etc as they can scare the pants off you and as I said before we are all different and if controlled will not be too bad hon xxxx
Ami wherefore art thou?? have you emigrated I miss your lovely positive thoughts and posts xxx
Baby Flutterby report
Still in Hospital and now has been put on Gabapentin to relieve the nerve pain, bless her she is going through the mill its heartbreaking watching her trying to get back to normal… Still hav;nt got a date for the meet up with Matron/Consultant from A&E but i’m sure it will happen soon, it put her in a bit of a quandry when she found out Vikki was still in hospital… and it looks like it will be weeks not days still I will be taking up residence soon!! If its not work its visiting and I can’t quite get my head round work while she is still in, It still feels wrong that I nurse other people when she still needs me Sigh!!!
Flutter onwards in this flipping foul weather flutterbys and they are saying there is still a water ban??? beggers belief when places like Spain etc seem to manage???
Oh well moan over have a lovely day girlies xxxxxhugxxxx
Thanks Doz for those words…holding on to any positive thoughts that I can right now. You’re right, I’m not going to rush back to work, it is more the emotional side of things at the moment, scratch the surface and the still very raw emotions emerge. I work in child and adolescent mental health so you can imagine the work is very emotional and I need to feel strong before facing it again.Hope the Gabapentin works for your daughter so that she is soon pain free, it must be really hard for you as her mum too.
Yaroo Jane…wig back in its box…how great is that!
Yvonne…its hard when you realise that lymphoedema can only be managed and not cured. My mum had it and like Doz was fitted for a compression sleeve which she wore when needed and it did help. It’s so difficult adjusting to our new realities. I’m still trying to get my head around the fact that I’ve had to have a mastectomy for preinvasive DCIS (admittedly it was high grade) and a friend of mine who had breast cancer that had spread to her nodes needed lumpectomy with axillary node clearance, radiotherapy and chemo but no mastectomy. Sending you lots of Flutterby hugs x
hi Elsa
Your friends BC sounds, NO is the same as mine, but i was given a choice of breast coming off or lump taken out, it was grade 2 and the lump was 3.1-5.0 cm was told that it had ruptchurd making another lump. Would you belive that i went to GP 3 months before cuz i felt that lump, and was told it was to do with my monthleys, i sighd with relife, and thought they must know when to send or not to send women to get it checked. and my nodes were positive, often wonder to my self if it was grade 1 and no nodes involved when i first found it, i will never know. it was only that i got a routine mammo cuz i turned 50 that it showed up as being naughty. think iam a bit down today, bl**dy lymphoedema has set this all off and cant get app till next week, am in a ranting mood. Feel better for ranting tho. Any way thats all in the past, and have had great treatment since cant fault it. RANT OVER LOL
Jane , last week for the first time, felt the wind blowing in my hair, my OH really laughed when i told him, i laughed as well.
need to get out more, cuz feeling negative, all my friends work,and have no family in midlands. my phone bill will be high tho, cuz speak every day to my mum for ages, my dad goes nuts, you can hear him in back ground saying " THATS ENOUGH" then we both fall into fits of laughter. think iam ramberling. 2morrow will be a better day
yvonne xxxxxx
I’ve been trying towrite this post for ages and every time, I get interrupted so I’ve been a long time Doz, thanks for missing me! Also someone else posts and my fingertips are smoking with typing so fast to keep up!! Anyhow, I’m just winging a big hug as I haven’t been able to stop thinking about your awfully sad posting. It must have taken an age for you all to recover and you still carry those scars, don‘t you. But……on a lighter not, I’m tittering at you being speechless! Glad you’re not…really…’cause like everyone, I love reading your posts. Vikki sounds so frustrated, but I know, being the lovely person you are, you’ll understand her, flutterby. I just feel for you so much but you must be one strong lady! Talking of lottery wins, I’ve won £23! No begging letters please! And I’m oohing & aahing at the Doremouse!
Elsa: Your beautiful quote is so fitting for us, thanks for sharing. Hope you enjoyed your film. I don’t know why it is that we like to be frightened? Try not to worry bout being off work, if it’s what you need, then so be it! Things will get better! Woman’s hour reminded me Jenny Murray had BC. I read her autobiography just before I was dx. I thought afterwards how much the BC part reminded me of myself, her situation was so similar in parts. I think me and my dog are joined at the hip I can’t even go to the toilet alone!!
Yvonne: I’m so pleased for you dispersing that black cloud and embracing the new you! I can’t imagine anyone reacting if you tell them, well only to understand or help! And if they didn’t well they’re not worth bothering with! I really have high regard for the fact it took 2 hrs to do your post, I wonder if I would have the same patience or stamina? But I’m glad you did ‘cause I like reading them, more interesting than mine!! Ha ha! Laughing at the Gosh, it’s 10.30!! Have to admit I haven’t a rush in the mornings! I’m lucky enough not to have had lympho, it must be really uncomfortable for you, I do hope you can get something sorted soon. Doz’s description of Lympho as a pain in the bum should make you smile, anyway.
Jane: Good to hear you think about your car episode in a positive way. The alternative is we dwell on these things and we’re the only one’s that suffer. Those who do the horrible things don’t worry! Wigs away! We don’t realise how much we appreciate our hair until we lose it, and it’s sooo long in growing back to something worth talking about.
Janice: Yes, these posts are getting longer and longer! It is nice that during your family’s stress you can both just be there for them and listen, whatever they say. That’s love!! The post from your friend, yes, I always give my dad a hug when I see him and ask how he is, and after losing my mum, he’ll reply “Yes,OK” and I ask “What’s that mean?” And yes, very encouraging about your friend of 73! Love the caterpillar quote!
Emmy By the time you read this you’ll be all done and dusted!! Yay Hey! Did you feel kind of odd after a year, those blue wings flitting out of there knowing you’re not going back again? I did. All here for virtual support you need to get on that recovery road, flutterby! I am joining Doz on the both hands outstretched and waiting for you.
babysteps The bad days do seem to get less frequent with time. About BC nurse There’s a team at my hospital and I could talk to any of them, which was useful if one wasn’t available?
fluffy chick & Carolyn Hope you’re both OK
Had a nice lunch out on Wed for a family birthday. There were a mixed group of ladies gathered having lunch, all rabbiting and laughing and having a great get together which made me think of us butterflies if we ever got together. There’d be not stopping us, nobody would get a word in edgeways, we‘d all be chattering of a heap!! Glad you all liked the poem. I can’t read it aloud as it always brings a lump to my throat! That and reading Doz’s story!!! Oh, just going now to watch Long Lost Family, that always makes me cry as well!
Love Amixx
hi flutterbys, i love to read all the posts, its very encouraging.
doz i still cannot believe you went through all that and now have to deal with BC and came out of it all such a strong and positive person. vikki is such a lucky girl to have such a strong and supportive mum to look out for her. hope she is getting better each day.
gardenparty, iam sending you all my sympathy, i have a friend with lymphoedema and she sais how painful it is. hope you get sorted now that you know not to do what the doc said!!!
elsa, thanks for sharing that quote. its lovely. stay off as long as possible, you know when you go back it will be like as if you were never away, same old slog!
jane, great to hear that the wig is gone for good. just in time for summer too.congratulations.
emmy, congratulations on finishing. now all your time is your own to enjoy.dont forget we are all here for support when you suddenly feel lost without backup.
well my sister had her reconstruction surgery today. her daughter emailed me --she is doing well. it was only a day case as i USA they only do implants there not tissue flap. she had an expander put in when she had her mastectomy but she got a huge infection in it and had to have it removed putting back her chemo by months as the scar wouldnt heal. im hoping that all will go well this time and there wont be a repeat of the infection.
well flutterbys ive got to tell you about a wonderful friend of my daughters who was diagnosed with cervical cancer 3years ago. 2 weeks before her 25th birthday. she hadnt had a smear test as she wasnt 25 yet. the lump was golf ball sized when removed. she had all the treatment, chemo and rad.then had to have some of her bowel removed due to scarring from the radium. she had a cyst on her bladder which they were looking at, last week they told her that she would probially have to have her bladder removed and have a bag and that the cancer was so invasive that it would probially do the rounds of her abdominal organs and she’d be better off having a colostomy as well!! today she txted that surgery was not an option as it was too dangerous and the cancer is not curable. she will have some maintenance chemo, but they are not hopeful. she is now 27 years old. can you all send big hugs and positive thoughts to her? she will defo need them. that news has stopped me moaning about myself. isnt it true though, that if we take time out to listen to others and stop moaning about ourselves that we will find someone much worse off than ourselves and stop us in our tracks? i know since i came on to this sitei have put my bc into its place, though at times its hard, but listening to what you all have gone through is sooooo much worse than the radium i had for a month.you all are my heroes.
take care everyone and thanks for the wonderful support.
baby steps there are no words to make things better but I am sending you a hug. As for moaning this is the place to do it and no one is any better/worse than anyone it’s a special place for fragile flutterbys to feel safe.
Doz am going to sleep/eat and try some walking I have an old daft song that was on an ad sometime “I don’t care that the weatherman says says it’s raining you won’t find me complaining!” it went through my head and stuck there when I saw the weather today! Feeling a bit fragile myself but hey hoo all done! I am sending you lots of spoons for your days ‘off’ when you have to go visit Vik and I agree with babysteps you are an amazing mum! I don’t know how many of you ever heard an interview years ago! with Mohamed Ali when he said the best diamonds are made under pressure, well I think that qualifies you my lovely to be a beautiful bright shining diamond! wow! I guess that is all of us too!
ami you wonderful woman I loved your post! It was quite funny when you said if we all met up we would so talk! it did make me smile and as ever a lovely thoughtful post which always can make me smile no matter how rough I have felt over the last few months! Talking of lottery wins I got £10 on two tickets so a whole £20 to go mad with! so we will have to change our identities and go into hiding!
‘H’ over and I did feel a bit strange that I won’t need to go every 3 weeks but I explained it to my daughter last night as one half of me wanting to skip out of there and the other telling me to be calm so I chose to go dancing in my head less tiring!
yvonne I am awed that you have taken so much time to write to us and I am sure I am not the only one to say it but knowing that makes us value your posts so very much you go girl!!!
Elsa sorry lovely I cannot watch films like that! I was so scared at a horror film whilst pregnant and could not watch them after that! Not sure a bit like when something makes you ill so you don’t eat/drink it again? Not sure why really so you are a braver soul than I! I hope you managed to see it through those fingers?
Jane how lovely the caterpillar quote is, I was thinking of you yesterday when someone was talking about how she had her car broken into and was so distressed as she had a friend who died many years ago who left her some tapes (he was in a band) which she was going to have transferred to disc and she forgot to take them out of the car overnight as she was going in the morning the b-----s took them and shredded the lot she was inconsolable love her the only thing she had of his and they took that off her! I do hope they get their comeuppance one day and Karma is waiting for them! As for the wig yay! it does feel good doesn’t it? I love that no one looks at me now, I did wear mine one day whilst in a large supermarket with my daughter who was looking at something and I had trundled on a little when this woman came over to say how lovely and shiny my hair was! I was speechless! she then went on to ask what product I used on it? My daughter by this point had caught up and we just burst out laughing really hard poor woman huffed and said you’re not going to share are you? and walked off! I could not move for laughing along with my daughter and I often think she must have thought we were rude and bonkers!
Janice I know how awful the waiting is for the parents and yes they will vent we can only wait it out! I think once they know what is going on then they can plan much like ourselves I felt better when I knew what was happening next. I was pleased to read of your friend of 73 wow! I spoke to a lady volunteer at the league of friends at the hospital and she tells me it was 30 years ago for her ,I like affirming stories they make you realise that it happens a lot more than we know.
Carolyn and fluffy chick I hope you are both good? I am off now to see my wonderful reflexologist then finish packing ! I still don’t care what the weatherman says ha!ha!ha! Take care all you wonderful flutterbys and I will be back (Ha! better than Arnie!) Group hug to all Em xxxxxxxxxxxxxx
I’m sat here smiling at the lovely long posts… who needs one of those electronic reading devices??? the brains gone dead cant remember what they are called??? ooooer!!!
Emmy you star over and done with yay how relieved must you be lovey and if the weatherman says its raining shoot the b****r you just go away and have that holiday and enjoy… Will miss you so dont forget us while your away… can just imagine you and Col meandering thro the lanes and over the brow dont do a Mary Poppins and start singing just enjoy your US time xxxhugxx
Babysteps if I could make things better with a few hugs and prayers then they are on the way with love poor girl and how unfair life is sometimes… Vikki has had abnormal smears since she was 17 and the last one came through the day before her back problem started… so thats on the back burner for the moment to be dealt with at a later date I am dumbfounded at how many young girlies we hear about that are having all these trauma’s so early in life?? its just so sad and cruel… big hug to you and your daughter also to help see you through what must be a very awful time xxhugxx Hope things stay well for your sister too xx
Ami… now dont you go mad with your lottery win ha ha!! save some for a rainy day!!! I must tell you about my win too… tho not earth shattering so no need to wait with baited breath!!!
£10 on a scratch card woo hoo!!! I NEVER buy them but standing at the counter in a queue I watched the people in front and most bought one so decided to give it a try… and £10 it was immediately spent on a massive chocolate cake for mine and Vikki’s supper YUMMY!!!
The thought of meeting up made me really smile… can you imagine it? watch out Flutterbys about… it has to be a must at some point on this journey… we should all go for a day at a Health spa where we can wear our PJ’s and DG’s all day OH yes please
I can really sympathize with our darling pets you said you cant go to the toilet without him… well Ben this morning did the unforgivable… he sat with his head on my lap while I was sat on the loo!!!EEEEEEK!!! not comfortable with that I told him to clear off he thought i’d said PLAY!!! and started a tug of war with my PJ bottoms… needless to say the morning ritual was cut short!!! Little monkey! Sorry that was’nt very pretty was it ha ha!!!
I’m no stronger than any of us lovely flutterbys on here, we all have our problems and were all still here fighting the good fight… and long may it continue xxxxxx
I have just been diagnosed with Osteo arthritis in my hands i’d been thinking it was just the side effects from Letrozole and Statins I have to take because of the high levels from Letrozole so been suffering with a swollen clicking (clunking) thumb for a while… I went to Dr’s yesterday as i’m having trouble painting my shields and she saw it immedately so a bit naffed off with myself and my damned body at the moment… not only are my eyes playing up and my knee’s not playing ball but now my hands have decided to join in!! AAAAAAAAAAAARRRGH!!! How am I expected to grow old gracefully when the body just is’nt listening
I will be gutted if I cant paint anymore… its been my hobby for over 40 yrs
If I have missed a reply to any posts its just my head doing its usual thing and I will just send you all a massive hug a ton of spoons and lots and lots of love… flutter on girls and just know you are not alone xxx
I love reading your posts so keep writing, much much better than them electronic gadgets which I still fail to remember the name of???must have a look its driving me mad now
xxxxxxxxxxxxxxhugxxxxxxxxxxxxxx
Wait for it…I am actually dressed and NOT in my PJ’s & DG…a miracle…
Ami…I hope you spend your winnings absolutely frivolously!I remember when I was told I didn’t need any more treatment after my mastectomy, my brother told me it must be my lucky day and that I should buy a lottery ticket, which I did, and a scratchcard…well, I won £10 on the lottery and £20 on the scratchcard! It took me all of oooh, now let me see…5 minutes to spend!
Doz…you remembered the word Kindle, hurray, a mini victory! My memory has gone to pot of late, I’ll put it down to what I’m going through at the moment!but if it doesn’t improve in a few months time…oh no!!!Now where was I??? Arthritis is no fun especially when it could affect your hobbies. Cod liver oil is meant to be good. A health spa sounds fantastic, no excuse needed for lounging around in PJ’s and DG…wonderful
Babysteps, that poor girl, my heart goes out to her, she’s so young to have to go through something like this.
Emmy, I still haven’t been to see the film…you see I am not that brave!Maybe Salmon Fishing in the Yemen would be better…Enjoy your holiday, who cares what the weatherman says…
Just went to loo before going out thinking my cat was asleep in the sitting room…but oh no…the bathroom door creaks open and in she came…don’t you just love em!
Sorry I have not checked in for a while. Still think about you lots even if not writing lol. Been stupid busy at work but things hopefully easing off soon so will be better at checking in again.
I had a lovely meal with my mum last night, and a group of girls who used to meet up when we took our toddlers swimming. We do it very three or four months and it’s just lovely to catch up, especially because three of us take our mums too so they can socialise. Lovely.
My only other regular date is the Edinburgh breast girls who are a lovely bunch too. One very good thing to come out of this BC.
My aunt gets a WLE and SLN on Weds. You and I know we are just waiting to see what exactly is in there but she has been given positive news so far.
Babysteps can I add healing thoughts for your friend too. What a mess.
Take care lovely ladies. Sorry it’s so quick. Carolyn xx
Doz i too have a horrible clicking thumb joint driving me doolally for ten days now. Itisok ok when strapped up. I too thought it was a letrozole joy delivered just to remind pills aren’t all they are racked up to be. Any suggestions how to get rid of it??? The microporesplint splint looks very grubby!!!
We had a lively meeting with the chemo in August group.great fun.ten ladies with the same hair do!!!
Cackles
hard to reply to everyones posts so wishing all those who have family ops etc coming up all the luck in the world your aunt is having same as me cackles so hope she is as lucky as me and only SLN removed.
babysteps I too am sending healing thoughts to your friend I have a friend who had ovarian cancer and has a stoma now as it was so advanced thankfully she seems to be doing okay at present.
Doz my thumbs ache at the base and I don’t know if its the knitting and sewing or the dreaded arthritis so I just take some Ibuprofen if its really bad and ease off the hobbies for a while.Ido hope you manage to continue your painting.How is baby flutterby doing is the Gabapentin working I do hope so.Well ladies love and hugs to everyone I haven’t mentioned and special hugs to those who are more in need than othersJnaice xxxx
Hi Janice and cackles
I dont know an answer to the thumb?? sadly i’m not up on bones arthritis etc just know its driving me nutty!!!
It takes a while to click forward then it kind of locks till I can get it clicked back…nearly dropped my precious coffee this morning!! Just picked it up and the thumb clicked ooooer!! not nice! I would have been one very unhappy bunny if I’d dropped it… ha ha!!!
Just done 2 double shifts (not planned) but yesterday one of the nurses went off sick at 9am which left them short for the late so ended up staying for the double to help… then I was a double today (planned) so after visiting Vikki both nights at 8pm i’m now winding down for the meeting tomorrow with the Matron etc… She seems really nice so i’m hoping I can just tell them how sad I was at Vikki’s treatment at A&E and hope they can come up with a reasonable answer I’m not out to upset any apple carts (no claim involved) I just want them to know that they should’nt assume back ache is always muscular and maybe when someone says this is’nt just backache… please could you scan it…they will in future listen
She is doing well in herself though is really fed up, the Gabapentin is kicking in and the pains in her hips and back are easing a bit, but still not enought to allow her to sit it is heartbreaking watching her, but still earlyish treatment wise… central line is doing its job well and she has’nt had any problems so thats a positive… Its just taking so long to see any results
I’m quite worn out with it all which sounds really selfish but I know she appreciates my daily visits… tiring but happy to do it!
We are a wonderful bunch of ladies and I send my love and hugs to you all, hoping the weekend has been peaceful for you with no dramas to spoil anyone’s me time… we do deserve it flutterbys xx
I hope Em is’nt singing the weathermans song too often and she has a brilliant break!!!
If I find out how to treat the blessed thumb and I WILL do some investigating I will pass on any info asap I was told to rub ibuprofen gel on… but it has’nt worked and clunk… it still is
nite nite flutterbys one and all xxxxxxxxxxxhugsxxxxxxxxxxx
Both hands are outstretched and waiting… tonight you can PJ relax look forward to your holiday and for you and Col I wish sunshine smiles and a lot of Me time xxxxhugsxxx
its heartbreaking watching her trying to get back to normal… Still hav;nt got a date for the meet up with Matron/Consultant from A&E but i’m sure it will happen soon, it put her in a bit of a quandry when she found out Vikki was still in hospital… and it looks like it will be weeks not days still